Fly High, Sweet Halle Mae

It feels surreal. I’m having dinner with Sam, Mikaeres asleep in the crib nearby and everything is just going onwards as if it’s just a normal day. We’re talking and discussing the weather. It feels surreal because I know, up in Manchester there’s a family feeling all the grief and pain and missing their sweet baby girl, as today they laid her to rest.

I’m devastated for them. I sobbed when I found out she’d passed. Which sounds weird, because I didn’t know the family well, only in the NKH circles online. But it hits home because this sweet girl was only two weeks younger than Kai. Because NKH is horrific and I feel like we’re all waiting for our turn. That one day, NKH will take Kai and it will be our turn to feel the grief and loss and pain. I sobbed because when we lose an NKH baby, the entire NKH community feels the loss. It reverberates around and we all grieve. She was one of ours, and one day it will be Mikaere.

We work so hard to keep Mikaere safe, to minimise the risk and give him the best possible shot. All NKH families are doing this. But the truth is that Nonketotic Hyperglycinema is terminal.

This is why we fundraise. The idea of a viable treatment is what gives us hope, that Mikaere won’t be taken from us and we’ll get to enjoy a future with him.

Please help us find a cure. Please help us fund research into NKH treatments. Please donate, or buy a book.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

Fundraise with us

Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.